Scots cancer patients left to cope alone

31 March 2011

Scots cancer patients are not getting the support and information they need to help them cope with their illness after they leave hospital.

A YouGov survey for leading charity Macmillan Cancer Support found that two thirds of cancer patients (66 per cent) in Scotland left hospital after initial treatment with no information about how to cope with the effects of cancer or its treatment [1].

The survey also found that two thirds of Scots questioned (65 per cent) did not get any on-going support from a cancer nurse specialist, while more than half of patients (57 per cent) said they were not given information about who to contact if they had any concerns about their illness [1].

As part of its Change Cancer Care Today campaign, Macmillan is calling for everyone who is diagnosed with cancer to be routinely offered information and support as part of a care plan.

Better use of cancer clinical nurse specialists for everyone diagnosed with cancer would also improve patient care.

With the number of people living with a cancer diagnosis set to nearly double in Scotland within the next 20 years [2], Macmillan is calling on urgent reforms to health services to cope with patients’ longer term needs.

Elspeth Atkinson, Macmillan’s director for Scotland, said:

'Patients often feel abandoned after their hospital treatment has ended and many develop long term emotional, psychological and physical problems that seriously affect their quality of life. Reform is needed as the current system does not meet patients’ long term needs.

'All too often people do not realise help is available which is why every patient must be given information about support services in their area and details of who they can contact if they have questions or concerns.

'We know that by empowering patients with the right kind of information also frees up NHS resources as health problems can be flagged up and treated at a much earlier stage.'

To highlight these issues, the charity is calling on the public to watch its one minute online film and back its Change Cancer Care Today e-campaign.

Each sign up triggers an email highlighting the charity’s calls to local candidates standing in the forthcoming Scottish Parliament elections.

Frances Connor, 51, of Wellhouse, Glasgow, was diagnosed with bowel cancer two years ago. She said:

'When you’re diagnosed with cancer, it’s such a shock and you don’t know what to think. For me, all the questions about what having cancer meant came much later.

'I think I would have coped much better if I had known from the day I was diagnosed where I could ask questions or feel comfortable about asking for help.

'I was lucky because when I was in hospital, I happened to open a newspaper and see an article about the Macmillan Information and Support Service at Easterhouse.

'If it hadn’t been for that, I wouldn’t have known where to turn. As it was, it was a month after my diagnosis before I got any information or support and, during that time, I felt so frightened because I didn’t know what was going to happen.'

Maureen Monaghan, 35, of Shettleston, Glasgow, said she doesn’t know how she would have coped without the on-going support of her clinical nurse specialist (CNS), a Macmillan nurse.

It is now almost four years since Maureen was diagnosed with Hodgkin’s Lymphoma but she has found she still needs to telephone her CNS who she met when she was first diagnosed.

Maureen, a project worker, explained:

'As time has gone on, other issues have come up for me, like coping with fatigue when I went back to work or some of the emotional side effects of the treatment.

'I know that I can always go back to my Macmillan nurse and ask questions that come up which is really good but I know that’s not the case for everyone. I do think cancer patients need to know from the time they are diagnosed where to go for information and support as I know I wouldn’t have coped so well without the help of my Macmillan nurse.'

Notes to editors:

References:

[1] YouGov online survey of 1,912 UK adults living with cancer; 141 of whom were living in Scotland. Fieldwork took place between 26 July-9 August 2010. 1740 respondents across the UK were sourced from YouGov’s online panel, with an additional 172 in Scotland, Wales and Northern Ireland sourced from Macmillan’s own contacts of people affected by cancer. The figures are unweighted.

[2] There are 190,000 people living with or beyond cancer in Scotland. If this number continues to rise by 3% a year, this could see 360,000 people living with or beyond cancer by 2030. Source: crude estimates made for the end of 2010 and 2030. Internal analysis by Intelligence & Research Macmillan Cancer Support. Analysis based on data from Maddams J, et al. Cancer prevalence in the United Kingdom: estimates for 2008. British Journal of Cancer. 2009. 101: 541-547. (Estimates assume any increase is consistent across each nation and remains unchanged over the 20 years, as such they are indicative only, are not statistically reliable and could change as more information becomes available.

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Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ.